A rare and debilitating genetic disease known as fibrodysplasia ossificans progressiva (FOP) has made it impossible for Jasmin Floyd,23, to lift her arms above her head or open her mouth wider than a few centimeters. Soon, she will be completely frozen, a living mannequin unable to move, as the disease causes more of her joints to fuse together. For now, the young woman is trying to live her life fully while she still can.

FOP is one of the rarest genetic diseases in the world, with Floyd being one of only 285 confirmed cases of the condition in the United States, CNN reported. The disease causes bone to form in muscles, tendons, ligaments, and other connective tissue, restricting movement and eventually forming a “second skeleton” that causes complete immobility. Whats makes the disease particularly fascinating is that it is the only known instance of a normal organ system spontaneously turning into another, the International Fibrodysplasia Ossificans Progressiva Association reported.

Read: Fibrodysplasia Ossificans Progressiva, Could Eventually Turn This Toddler Into A Statue

Floyd’s disease has progressed so far that she can no longer reach her arms above her shoulders, cannot move her neck at all, struggles to bend over, and cannot open her mouth more than a centimeter. What’s more, not only does the disease cause immobility, it also causes excruciating pain.

"I haven't really found something [for] when I have intense pain. I've been on strong medications, but sometimes, it doesn't even touch the pain I have,” Floyd told CNN. “I've gotten used to letting it do its thing."

Unfortunately, there is no cure for the disease and now way to slow down its progression. Her doctors estimate that in only seven years she may be confined to a wheel chair. Floyd is determined to live well in the meantime, including travelling as much as possible while she still can.

There is hope though. In 2006, researchers at the University of Pennsylvania discovered the FOP gene, and are now using this discovery to help develop potential treatment options.

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